October 17, 2017

The Lie I Told Myself about Down Syndrome

lies about down syndrome

We were back at the pediatrician’s office for the second time in a week and for the fourth time in the past month. Every visit has been for my son Anderson, who has Down syndrome.

With my youngest son’s medical conditions taking center stage recently, I almost forgot about how frequently Anderson requires going to the doctor for ear infections, croup and the like.

His pediatrician noticed how much we had been in lately. He’s also noticed some of Anderson’s extreme toddler antics and brought up his behavior. He said to me, “We know you’re dealing with much more than the average parent and we’re here for you.”

His words got me.

When I was a new special needs parent I told myself that Anderson’s extra chromosome didn’t make things that much harder. We had therapy appoints, specialist appointments and more sickness than I remembered with our daughter, but it wasn’t anything I couldn’t handle.

I even balked at extra help available. I didn’t need it. I could do it myself.

After a hard day at therapy when I had let everything bubble up for too long, it all came pouring out of my eyes for Anderson’s beloved therapist to see. I told myself that day that Down syndrome wasn’t hard, parenting was. That’s what I told you, my readers.

And it was a lie. I didn’t mean to lie to you. It was a lie I didn’t realize I was telling myself.

I love my son. I don’t believe Down syndrome stole something from him the way I believed when I was pregnant with him. I believe his extra chromosome is a large part of who he is and Anderson is not Anderson without it.

But here’s the truth: parenting Anderson is absolutely harder than parenting my typical child. I didn’t feel the need to go to six months of advocacy courses and them some with my daughter. I don’t stress over everything she does or doesn’t do. I take her to the doctor maybe three times for the entire year and she doesn’t require therapy to aid her development.

Some of the things that make parenting Anderson more difficult are in large part due to his age, but to tell you or myself that it isn’t also due to Down syndrome, is just not truthful.

I realize now, I wanted to view us as a ‘normal’ family. I wanted to be like everyone else, like my girlfriends and their families. I didn’t want his extra chromosome to affect him so much, so I told myself that it didn’t.

I wonder how many of us lie to ourselves to make things easier? If we say it, think it enough, perhaps it may become reality. We mind over matter it and miss the heart of the matter.

Here’s the thing about lying to ourselves—we are not only cheating the liar, but others we are inadvertently lying to. Maybe another parent of a child with Down syndrome read that post and thought—gee, why is this so hard for me and not her? What’s wrong with me? Words matter. Whether we are putting them on the World Wide Web for anyone to see or quietly saying them in an intimate conversation.

The lies shut down our ability to connect with others. We push away help because we tell ourselves we don’t need it and we push others out by not being truthful. We rob them of the chance to say, “me too.”

So, here is my truth: Parenting is hard. Some of my most exhausting days have very little to do with Down syndrome and very much to do with the fact I’m raising three people four and under. However, Down syndrome makes my overall parenting life more difficult.

It’s okay to say that. I can say that and still proclaim this truth: Down syndrome adds extra into our lives. A lot of those extras are complex and difficult. But the opposite of difficult is easy—not good. That 47th chromosome has also added extra meaning, extra beauty and I wouldn’t extract the extra if I could.


Author’s note: parenting Anderson has had its hard points and it’s calm points. Some say these first years of juggling the health issues and therapy appointments are harder. Others say the school years and dealing with administrations, learning and social issues are harder. I realize things will ebb and flow with Anderson, just like the will with my other children, but I also think the journey will likely be a more intense ride at times. It certainly has been so far. The ride has been wild and worthy.

Lies about Down syndrome

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2 thoughts on “The Lie I Told Myself about Down Syndrome”

  1. I read this as my youngest, Nathan 10 months old is at Children’s Hospital Los Angeles. An hour away. He has had five surgeries and only 10 months old. I tell myself the very same things. I wouldn’t change him I feel like he’s made so many of us better people but it is so hard. My two older kids never needed surgeries and early intervention. I often wonder what our future holds and it’s scary. He has a lot of other medical issues aside from his extra chromosome. I share your concerns and sentiment.

  2. Thank you for this post. I have been struggling lately worrying about what my little Ivan isn’t doing. Having a child with Down syndrome is difficult. He is my angel and my love is endless but I get really upset because I don’t know why it has to be difficult for him to do things that others do naturally and with no hesitation. Any way you are an amazing person and I love reading your posts and hearing how your life is going. Take care

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